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Lyme Patient Reality

Lyme disease patients are confronted with a complicated version of reality in a number of ways.

Lyme disease can cause neuropsychiatric symptoms, including depression and severe panic disorders and worse, due to damage caused to the neurological system. This illness in and of itself can be life affecting, and can cause psychiatric vulnerabilities, particularly when the patient is exposed to stressful situations beyond the physical illness.

Patients who present with late-stage Lyme disease often have neuropsychiatric involvement as well as a number of other severe physical issues that manifest in unpredictable ways, which complicates diagnosis.

For example, the progression of my symptoms was slow but severe, culminating in severe neurological (and other) problems by my early 30s that was mistaken for possible ALS or multiple sclerosis. Thousands of dollars of specialized tests later, I was told that I have some neurological anomalies–some of them “very concerning”–but that taken together, they ruled out ALS, did not add up to MS, and therefore nothing more could be done unless I develop the characteristic brain tissue scarring of MS later on in life. So, essentially, I was told to stop looking for a doctor to help because nothing more could be done. In my case, I was able to make it to work and back on most days, but I was in bed by 6pm, asleep by 7pm, and awake at 4am every day with only an hour or two of productivity before extreme fatigue exhausted me. Episodes of nerve pain in my eye, arms, and feet are indescribable. I was, truly, unaware that such extreme levels of pain could be felt.

Because Lyme disease blood tests are unreliable due to low sensitivity, and because “Lyme disease” may be caused by more than the singular bacterium for which Lyme diagnostics test, a great number of Lyme patients are told that they do not have Lyme disease. These false negatives are not the fault of a person, but rather the failure of current diagnostic technology. However, a false negative allows the disease to continue to progress and cause further degradation of the patient.

Patients with late-stage Lyme disease know they are ill. The pain, fatigue, and discomfort are impossible to overlook or overcome without treatment. So patients continue to search for a medical professional who can help them. As they go from specialist to specialist, most encounter a systemic culture of medical professionals who have been trained to doubt Lyme disease patients, including those who have been diagnosed and treated for Lyme disease in the past.

This Lyme disease patient bias has become so pervasive and out of balance with the overall notion of medical practice–whose purpose is to relieve patients of their illness, which includes working to determine what the illness is–that many patients report being immediately dismissed by any doctors to whom they mention Lyme disease. This is a medical prejudice, and it is dangerous practice out of keeping with the Hippocratic oath.

Question to consider:

Is medical practice today limited exclusively to the administration of laboratory tests followed by the prescription of medications to treat symptoms without any kind of further investigation? Lyme disease patients frequently report that this is their experience with almost all doctors: doctors order labs, look at lab reports, and dictate the absolute verdict to patients. It is imperative to realize that as all emerging diseases emerge, none of these diseases is immediately well understood. Whether the cause of patient illness is Lyme disease or any other disease, should practitioners not continue to investigate the cause in the interest of discovering more and contributing to the body of medical science, as well as the primary interest of compassionately and competently treating the patient?

Or, do we accept that patient care today is narrowly defined by the ordering of existing laboratory tests and prescription of pharmaceutical medications without any further differential diagnosis? Effectively, giving up on any patient whose case is not cut and dry, suggesting to patients who have persistent and sometimes disabling health problems that since their labs are clear, those patients are entirely well and need to get on with life.

So, then, patients with Lyme disease including those who know they have it and those who don’t, often are told that either 1) they may have a psychiatric disorder and not a physical illness at all; 2) they are for unknown reasons pretending to be ill when they are not ill.

Questions to consider:

While many aspects of Lyme disease are contentious, it is accepted that Lyme disease can affect the neurological system and may present with severe neuropsychiatric symptoms. Given this, even when a physician suspects a patient has some sort of mental illness, combined with complaints of severe nerve and joint pain and often unusual rashes, should the doctor not consider psychiatric symptoms that are in keeping with those associated with Lyme disease to support further investigation into whether a patient may have undetectable Lyme rather than dismissing him or her because he or she is anxious and depressed?

What motivation would any patient have for interrupting his or her formerly productive life with constant medical visits, complaints of severe physical health problems, and often thousands or tens of thousands of dollars of medical bills? Some (likely very few) individuals may pretend illness for one reason or another; the vast majority of people do not do this. Most people who have been diagnosed with Lyme disease via the characteristic EM rash were at one time highly active and productive people. In my case, I was an avid cyclist who rode 35-40 miles each weekend and I was in the gym 5-6 days a week, every week. These activities were a primary part of my life and joy of life. This is the case with many people who have Lyme disease: one must be active outdoors in order to be bitten by a tick in the first place, and so it makes little sense as a formerly active person to be told by a doctor that you are simply, suddenly, depressed and/or lazy, and that you either need to “snap out of it and get out of bed” or take a load of psychiatric medications to get your old life back. I’ve tried both. Neither improved my health at all. Treatment for Lyme disease did.

Even if a few individuals do imagine or pretend illness, it is unimaginable that great numbers of patients do this. And it is impossible that such a large and rapidly growing segment of the population would do this in such a consistent manner, persistently pursuing medical help for symptoms that are variable, but overall the same. Lyme disease patients report neurological pain, joint pain, extreme fatigue, the sudden onset of severe psychiatric symptoms, double vision, hearing loss, imbalance, senility-like memory and cognitive malfunction at all ages, and others–consistently.

I have carefully considered whether the argument that Lyme disease is a collectively imagined illness–a trend–may hold any water. My pursuit of medical help was motivated by ending the pain I was experiencing, regaining energy and getting my life back. When I experienced partial paralysis and other severe physical dysfunctions, I sought out medical help. I had absolutely no idea what might be wrong with me and no suspicion of any specific condition, aside from a fear that I may have been living with undiagnosed HIV and the suggestion by someone I met at a professional conference that my symptoms “sound a lot like multiple sclerosis.” HIV and MS were the illnesses I was concerned about. And the primary care physician I saw had the same concerns: He tested me for HIV (negative) and ordered brain scans to rule out MS (no evidence of multiple sclerosis). He referred me to a neurologist who immediately ordered electromyography and nerve velocity conduction tests to rule out ALS. Those excruciating and expensive tests were negative, as well. My symptoms continued to worsen. I had double vision, was again suspected of having early stage MS, and was referred to a neuro-ophthalmologist, who diagnosed an anomaly with my right optic nerve that could not be explained and so was explained as “probably congenital.” A second neurologist noted “very concerning” abnormally brisk knee-jerk reflexes 4/5+ with clonus, again with no explanation. He also noted arthritis of my cervical spine, which he said was unusual for someone in his early 30s, but that since there was no explanation, that too was probably congenital.

The doctors above, and others, never mentioned Lyme disease as a possibility. I never considered Lyme disease as a possibility. Even as I was becoming disabled with no explanation, my mother reminded me that I had Lyme disease when I was 18 or 19 and she urged me to see a doctor about it. I dismissed this suggestion and did not think twice about it; my rationale was “I have something serious like multiple sclerosis.” I was on some level offended that my mother thought something as (I thought.) simple as Lyme disease might be at the root of my problem.

Because the thought of Lyme never entered my mind early on, it is impossible that I had pre-determined/imagined that I have Lyme disease and was pursuing that as a diagnosis. In fact, I believed that Lyme disease was an insignificant, mild and easily curable illness and dismissed any suggestion that it might be causing health problems as severe as mine.

Further, I began to see a psychiatrist monthly in 2010 because of depression and the sudden onset of panic attacks, which were causing obsessive suicidal ideation. I was in a state of constant panic, and this manifested suddenly and with no context other than my physical health problems; so, the psychiatrist and I agreed that I was under a great deal of stress. My doctor prescribed four psychiatric medications–Zoloft, Wellbutrin, Klonopin and Seroquel. I was on these for years, in a zombie-like state. To a certain extent, they did quell my panicked feelings, and Seroquel gave me restful sleep. Over the years, through cognitive-behavioral therapy, I learned to accept the degradation of my body and this helped to a certain extent to calm me, although I was in a state of severe depression all the time despite the medications. After several years, my psychiatrist told me definitively that I do not have a pathological mental illness and that she had witnessed my continuing physical degradation over the years–that something was definitely wrong with me, even if doctors could not detect it. This was also the conclusion of the second neurologist I saw, after approximately $6,000 of medical laboratories. Still, at this time, there was no mention or consideration of Lyme disease. And so there is no possibility that I had pre-determined I have what some claim to be a mythological disease that does not exist in reality.

I was finally re-diagnosed with Lyme disease a little over a year ago. I was treated with antibiotics. Nearly all of my nerve pain vanished after about five months on antibiotics and various dietary supplements (which my doctor does not sell to me; I order all of them online–and so there is zero financial gain for my doctor). Much more surprisingly, within 6-12 months, nearly all of my psychiatric symptoms improved to the extent that I no longer take psychiatric medications. It turns out that treating for Lyme disease has been, at least as it seems now, a cure for my mental illness.

My conclusion based upon my life experiences is that Lyme disease may contribute to psychiatric problems precisely because of its pathology: Borrelia burgdorferi and related bacteria infect the brain and this manifests in many patients as neuro-psychiatric symptoms. While Lyme disease may cause or exacerbate mental illness, Lyme disease is not a mental illness or imagined. Treating psychiatric symptoms with antidepressants, antianxiolytics and antipsychotics may improve some symptoms but probably will not permanently resolve them. In my case, treating Lyme disease with antibiotics appears to have resolved my psychiatric symptoms almost completely.

When patients who experience devastating, sometimes debilitating health problems are told they are well by virtue of medical labs not identifying what is at the root of their health problems, this causes a cognitive dissonance that, paradoxically, can cause psychological problems as the mind attempts to reconcile the inescapable reality of being ill and being told by medical professionals that they are well. Physicians are ethically obligated to treat patients with care, and historically most practicing doctors investigated difficult patient cases in an attempt to figure out what was wrong with that patient and improve his or her health and wellness. Today, nearly all doctors are entirely dependent on already existing lab tests available through a few select commercial diagnostic companies, treat only according to the quantitative results of these tests while dismissing patients’ own reported health problems and clinical observations, and treat exclusively via their prescription pads.

Lyme disease patients and patients who have any unknown, emerging diseases must be treated with respect, compassion, and faith that they are not spending countless hours and dollars simply for the fun of flipping through magazines in physician waiting rooms and being met with doubt and condescension when they make pleas for help. The culture has to change. The consequences of continuing this mode of patient-exclusive practice is not only harmful to individual patients, but it also greatly limits what should be a culture of doctors reporting undiagnosable symptoms, which can help to figure out emerging diseases.